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Showing posts with label guillan barre. Show all posts
Showing posts with label guillan barre. Show all posts

Wednesday, January 20, 2010

Jennifer's Guest Blog

I’ve been meaning to write this guest blog and as most of you are aware, because of recent events I haven’t had much time to sit down and write. They say motherhood requires a certain amount of sacrifice and I didn’t fully appreciate that statement until I gave birth to Wyatt in 2007. Since then, I developed a profound appreciation for time, not just in a ticking clock sort of way, but in presence of mind and awareness of the moment. This desire to live in the moment grew, not only out of appreciation for the swiftness in which time passes, but in the longing for moments missed. No deeper could this feeling set in, then when I learned Jim had called 911 and was in the ER – he had no feeling in his hands and feet and was unable to walk. No one knew what was wrong and I saw life as I knew it, shift and disappear before my eyes. It was like someone was erasing my chalkboard without filling in the blank spots as they swept across the board. This man I love¸ the father of my children and the person with whom I planned to wrinkle with was sick and to what degree was still undetermined.

When we found out it was Guillain Barre, I felt like I was holding my breath for a long time underwater. For some reason, I knew that I would be triumphant in holding it for a Guinness Book of World Records amount of time. Yes – it would be challenging, but I am one of those people that if I put my mind to it and put on the proverbial work hat, I am calm in a crisis. I felt like Jim was too stubborn, and much too strong to let this illness take him over completely so I stayed in that mindset. Fortunately, my husband was exactly as I expected – too stubborn and too strong to let the illness take him over completely. We saw the illness stall and his recovery begin and Jim’s positive and inspirational voice take us up to the top of water so we could all breathe again.

The reason I wanted to write about my experience through all of this, is to share with others what I learned in the process. I won’t claim to have the authority on how to best support someone you love in crisis, but I do think that our experiences as a family shaped me to be a stronger person and hopefully, in future, shaped us to be a stronger family. When Jim was in the hospital for 28 days, I was 8 ½ months pregnant with a two-year old boy at home who had no idea why he had to “visit” daddy. I knew that Jim would have wanted me to do my best to keep stability in the home for the health of our children, and my health as his very pregnant wife. So, we worked as a team to create normalcy for each other – knowing that life hadn’t stopped around us.

As I mentioned, I put my hard hat on and Jim kept focused on recovery. There were so many moving parts to our lives at the time including: moving into a new home, preparing for maternity leave at work, life in general like fixing cars and paying bills – responsibilities that Jim would have cared for, had he been home, that I needed to take on. There were moments where daily life could have just stopped us in our tracks, but something much bigger was happening to us so we had to let life work itself out. I admit, there were times where I didn’t think I could hold my breath any longer. I couldn’t put the image of Jim struggling to walk out of my head at night and when he went back into the ER from rehab, I thought he may not make it to hold my hand at Olivia’s birth, or be the first arms to hold her when she entered the world. Those feelings hugged my days and hovered over me like a grey cloud and it would make me weary. Sometimes I couldn’t keep it from Jim and I was disappointed in myself that I didn’t hide it better, especially when he seemed to have such a positive grasp on his experience, as challenging as it was. I guess it was during this time that I realized how much I love this man and that my life without him would be devastating. I also learned that I needed to live in his world and rather than feel these very justified feelings, mirror his experience instead. Maybe I didn’t know what he feeling or going through, and he couldn’t know what I was dealing with at the time either. The truth is, neither of us needed to know. It had to be about being his cheering section, his safe place to hide if it got tough and arms to be held in when the loneliness of the hospital sunk in. I don’t know if I was able to provide as much of that kind of “wifely” support, the kind that only comes from a wife and not a friend because I was so focused on keeping the world around me from spinning, but I made it my daily promise to give him some semblance of normalcy. I tried to make it so my actions showed him that he was the most important person and through simple gestures like bringing him a coffee in the morning, just the way he liked it and working with his mom and my mom to bake homemade meals each night so we could eat together as a family, and to sit on his tiny bed until he fell asleep, watching our favorite TV shows, I was hopeful he would know just how much I love him. By maintaining these rituals and the constancy of home life, we all tried to make everything feel like it was a little bit of normal amidst all the uncertainty.

Jim and I have learned to say, “This too shall pass”, but we also made a promise to ourselves to keep from living for the future. We need to be reminded that these everyday experiences shape us, change us and hopefully for the better. I am more aware of myself and my happiness and the need to prioritize happiness in my life too. What a better way to learn a lesson than to witness someone go through it. We should all be so lucky to learn from others and take the lessons out of it, to impart on our own journey. Our family could look at this last year as one of the worst years of our lives – but instead, we plan to look at 2009 as the year that defined us. What I hope you can take away from my story, is to learn it through us and not have to learn it the hard way. Take stock of your life, appreciate how wonderful it is and love it and everyone in it just a little bit more.

In the end, what I’ve taken away from all of this is a deepening of a belief system that started at the onset of parenthood and how I started off this blog – the importance of staying present. Through it all – Jim and I managed to stay present. In rough patches and in times of unimaginable harmony we strived to appreciate the moment. Sometimes, appreciating the moment is allowing room to fail and forgiving the moment itself as we never handle every situation in life with perfect accuracy and intention (another lesson I learned too well through this process). Sometimes, appreciating the moment is to simply live through it and know that time is fleeting. And, most importantly, sometimes appreciating the moment is to relish in it – learning that we all may lose the ability to walk, or run or hold our child again so don’t forget what that feels like every single day. When you feel rushed at night and you hear, “just one more story, mommy”, read one more story. When you feel too tired to pick up the PlayDoh or take out the scissors and paper and crayons, or feel like you’re too tired to get off the couch and play outside, or you’re too mad about the dishes in the sink to give your spouse a hug and kiss goodnight – remember that you could be a 911 call away from losing that ability altogether - that you may not get the chance to do these things, to play with your babies, or to hold your husband through the night. So, in short – lesson learned: appreciate this time we have with each other and do so right now – don’t waste time by doing it later, do it now.

Thanks for listening and supporting us.

Jen

Sunday, October 11, 2009

Update on progress, hold the deep thoughts......

Sunday, October 10th, 2009


So I haven’t stopped thinking about the “deep” stuff but I thought I’d give a nice simple update outlining how much improvement I have made over the past couple of days.


(I’ll write this at the top of the page in case you don’t make it all the way to the bottom….
Please send me your current phone numbers, email and mailing addresses as I am going to spend some time updating my contacts this week. jimm@stx.com. Thanks)


Friday
  1. Started the day with a trip home!!! To check things out and see if any changes to layout etc need to be made to accommodate me in the house.
    1. Really exciting and wonderful to walk through my own front door but really hard to have Wyatt say “ No Daddy I no want you go, No Daddy”
    2. Good news is that the new apartment is perfect for my present situation
    3. Can’t wait to sleep in my own bed, with Jenny and start getting better sleep
  2. Worked a lot on balance and was able to balance myself on a BOSU ball alone, started very shaky but with a lot of concentration was able to quiet the muscles
  3. Walked for 5 minutes on the treadmill at 1.6 mph trying to improve cadence
  4. Did some “squats” down to almost 45 degrees with no support
  5. Walked to therapy without a cane (75 feet) and then kicked a soccer ball back to my room at the end of the day with no cane.
  6. Got my butt handed to me in the card game UNO by one of the other patients
  7. Nerve and Muscle pain is like I was working out full tilt getting ready for the season
  8. Woke up at 5 AM for the second day with a low level migraine headache that we couldn’t beat with meds, blood pressure as high as 170 over 108 (needs work)


Saturday
  1. Back on the treadmill, this time for 6 minutes, and got going as fast as 2.0 mph
  2. Woke up again with Migraine, third day in a row, going to try some new meds to beat it
  3. Body is very sore again, low back, neck and all stops in between.
    1. Spent a lot of therapy time on trying to fix back and neck
    2. Hips and “girdle” seem to fall out of whack and can’t stay in tune all of the muscles learning to operate together again
    3. Who thought walking was so hard on the old body?!
  4. Missing the UNC vs. Brown Game today which is sad but soon, would have been too much commotion likely
  5. In the afternoon we did almost a full lap around the building, about 200 meters
    1. Walking speed is almost normal for short bursts in the hallway
    2. Still need to get endurance up but they say it will come back quickly now
    3. Graduated to no cane!!!! And was given permission to operate in my hospital room with no supervision. Like a 13 year old!!! Woo Hoooo
    4. Earned the freedom to walk around the floor with no nurse or therapist as long as Jennifer or my Mom are here
  6. BP topped out at 186 over 112 at one point today – good bye salty and fried foods. Time to apply the “short term pain (sacrifice) = long term pleasure (health)” theory on the food front ( starting first thing tomorrow, lol)

  7. Coming up...
  8. Sunday is a day of rest around here, but I’m not resting, try to walk as much as I can with Jennifer and My Mom, rip some push-ups and do some ab work
    1. Will try to get some video of walking to update Facebook and the kids back home
  9. I have my tentative DD (discharge date) for October 15th – This Thursday!!!!!
    1. Maybe even earlier with all of the gains of the past couple days
  10. Trip to one of my favorite places, the grocery store, on Monday learn how to function in that environment and get groceries to cook a meal.
  11. Tuesday I get to cook a meal for the staff. Is it conceited to say that I miss my own cooking? Have to decide what to make?
  12. Wednesday will be spent getting ready to move home Thursday.
  13. They are convinced they get me into a very light jog for 10 – 20 yards by Thursday!
  14. Drop five LBS through diet control and increased energy spend.
  15. DID I MENTION MOVE HOME ON THURSDAY!!!!! WOOOOHOOOO


Thanks you so much to everyone for the continued support and for the cards and gifts that we have received. Very special thanks to Ryan, Kristin, Sahr and Kelly (my therapists) they have been so incredible.


Love you all,
Jim